Volunteer Story: Caitlin (multiple sclerosis)

Video of I’m sad that it’s ending.

Caitlin Anderson tells her father Reed Anderson about her experience living with multiple sclerosis and her decision to be a part of clinical trial for MS at the National Institutes of Health. The trial has just ended and Caitlin reflects on her fears of deteriorating quickly without treatment and her hopes that her participation will help lead to a treatment or cure one day for others with MS.

Transcript

Caitlin Anderson: One of the phrases around MS is “You don’t get MS until you get MS.” And so a lot of folks feel like they can’t describe their day or describe how they’re feeling to someone who’s not living with it because nobody understands and quite often it’s an invisible illness.

So after several years living with MS, a friend sent me an email message that said, “Hey look, here’s a study about primary progressive. You might be interested.”

Reed Anderson: Well here we are at NIH.

Caitlin Anderson: I think we first came at the end of May 2011 and now here we are at the beginning of June 2015. And it’s my 13th trip here. Still don’t know if it helped and now we don’t have access to the medicine. And nothing is approved by the FDA.

Reed Anderson: So hope and then disappointment? Or how do you think about that or feel about it?

Caitlin Anderson: The hope is that they continue to find good benefits and that the pharmaceutical company realize that it did help and maybe they could fast track it. Disappointment is that it’s ending. I feel like this has become another family. My biggest fear, Dad, is that this four years did something and has slowed my progression…

Reed Anderson: Right.

Caitlin Anderson: …and has helped, so I’m afraid that as soon as I stop the medicine, I’m afraid that I’m gonna go on a big downhill slide. That’s really scary.

Reed Anderson: Do you think about regrets?

Caitlin Anderson: No. Never. If I didn’t do this, if my buddies didn’t do this, and the friends that you meet in the hallway didn’t do this, there won’t be anything for the future. It has to go through that process.

I’ll start looking for other studies that I might be eligible for. I want to make a contribution.